Autism Independence and NIHR
The number of children and adults being diagnosed with autism is rising, especially among migrant communities. Autism is a condition that affects social interaction, communication and behaviour. Children whose parents have migrated from Somalia to western countries, including the UK, appear to be at greater risk of developing autism.
The needs and experiences of Somali families with children with autism aren’t well understood. Many families don’t engage with health or social services.
We worked in partnership with Autism Independence (AI), a community group that supports Somali families affected by autism. Autism Independence is led by Nura Aabe. Nura came from Somalia to the UK aged eight, and has a child with autism herself. She campaigns for wider awareness of the issues surrounding autism in the Somali community.
Project aims
We wanted to find out about the experiences of Somali families, living in Bristol, with a child with autism. We set out to explore:
- how autism is seen and understood in the Somali community
- how parents find out that their child has autism
- their experiences of health and social care
- how health and social care services can best support these families
What we did
We invited Somali parents who have a child with autism to take part in interviews. The interviews were conducted by Fiona Fox, from CLAHRC West, and Nura, who were both researchers on the project. Nura also translated and acted as a ‘cultural interpreter’.
We interviewed 15 parents, including 12 mothers and three fathers. The interviews took place either at a community centre or in families’ homes, in both Somali and English.
How we involved people
This research would not have been possible without Nura, who approached Dheeraj Rai at the University of Bristol with this research idea. Together they put the idea forward to CLAHRC West.
Early ideas and plans were discussed at a community meeting with Somali parents. Local community members of Autism Independence were involved in all stages, from designing interview questions to sharing the findings.
The approach, study plan and methods were negotiated between CLAHRC West and members of Autism Independence, with Nura leading negotiations. All the research materials, including flyers and the interview schedule, were developed and produced in English and Somali, with Nura translating.
What we found and what this means
Four themes emerged from the interviews with parents:
- My child is different
- Perceptions of autism
- Navigating the system
- Support
My child is different
Parents noticed that their child was developing differently to other children, especially when they didn’t speak at the expected age. Parents felt upset and frustrated at the struggle to communicate. They described their child’s difficulties with eating, sleeping, soiling themselves, running away or violent outbursts and many parents were exhausted. It was difficult to go outside their home and this affected the other children in the family.
Some couples disagreed with each other about the diagnosis and some had difficulty accepting it. Although parents could see small improvements in their children, many were worried about the future and the support that their child would need as an adult.
Perceptions of autism
There is no Somali word for autism, so many parents were confused when they were told that their child had autism. They had never heard of autism before and their child didn’t show physical signs of disability. This made it difficult to explain to family and friends. Mental illness can be viewed negatively in the Somali community, so some parents didn’t want to discuss it. Instead they hid their child and delayed seeking help.
Members of the community often advised parents that their child would improve and told them not to worry or seek help from doctors. Some parents hoped that their child might ‘grow out’ of autism, or might not have autism at all.
They also found comfort in their faith. They accepted what Allah gave them, but hoped he might help their child to improve in the future.
Navigating the system
While their child was being assessed, parents often felt confused by all the different people involved and the many appointments they had to attend.
When they were told that their child had autism, parents were shocked or sad, and some didn’t believe it. They wanted a better explanation and more information in Somali. Even those with fluent English found it hard to understand some of the words used. They said that an interpreter should always be available.
Many families didn’t know where to get help for their child because the health and education services were not familiar to them. Some did not trust social services, as they feared they would use their power to remove children from their families. Others found social services helpful, but were frustrated with long waits to receive support.
Families were not always sure whether a mainstream or special needs school was best for their child and some felt that they were not given enough choice. This was especially hard when children moved from nursery to school. Parents wanted their child to have specialist support for autism and to get help with their speech and language at school.
Support
Some parents were supported to get help by social workers, special educational needs coordinators (SENCO), key workers and nursery staff. Parents said regular communication with school or nursery was especially helpful.
Some found the parent support programme ‘Early Bird Course’ a useful way to learn about communicating and coping with their child. Others felt unsupported and wanted more help with speech and language and respite care at weekends. Some parents suggested that a Somali link worker, who understood autism, could help them find the services they needed.
Many families wanted places in the community where they could safely take their child to play. They felt that this might encourage families not to hide their children, but to socialise with them and at the same time increase understanding about autism within their community.
ACTA, a community theatre company, Nura and members of the Somali community affected by autism have developed and performed a play exploring these issues called ‘Yusuf can’t talk’. The play has been instrumental in raising awareness of autism in the Somali community and of the challenges for families in raising a child with autism. It continues to be performed nationally and internationally.
The research team and members of ACTA gave a presentation about these issues to the All Party Parliamentary Group on Autism at the House of Commons on 2 November 2016, which was also attended by members of the National Autistic Society. The team have given presentations at professional conferences and during Healthy City Week Bristol 2016, and continue to present the research at relevant events.
We are exploring ways to continue the work with the Somali community, including:
- raising awareness of autism, to spot problems early and to reduce negative reactions when a child is diagnosed
- working with fathers to reduce the incidence of family break-up or marital problems when a child is diagnosed
- developing culturally sensitive services for migrant families and take account of the stigma families encounter
- helping families navigate complex services, spanning health and social services and the education sector
- developing integrated services that ‘wrap around’ the child’s needs
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Autism Independence and NIHR